Friday, October 11, 2019

30 Stories 30 Faces 30 Years: Brittany Stevens

"CCA means love and acceptance for everyone! One of our favorite CCA memories is listening to David Roche speak about "moments of grace,” and how his grandmother's influence, words and actions, taught him to stand tall...look people in their face and let them see your beautiful face! And, he talked about meeting the love of his life, Marlena."

                        -Harlena on behalf of Brittany Stevens, CCA Adult

Brittany Stevens loves to dance, give big hugs, tickle, and don

costume jewelry. Her devoted mother, Harlena, says, “Miss Brittany is pure love, light, and sunshine for everyone that she meets!” She attended Philadelphia Public Schools, via the Life Skills Program. The combination of great, creative special education teachers, awesome family support, and a Mom who became my fiercest advocate, she blossomed into the unique woman that she is today. Brittany works at the PATH Workshop (People Acting To Help), participates in all kinds of activities via Special Vacations, an organization that provides unlimited events for adults with disabilities, and goes away to adult camp, Carousel Connections Camp, one to two weeks every summer where she continues to learn work and life skills.

Though the doctors did not think that she would talk, walk, run, or
even know she was in the world, Britany defied all those odds. She is non-verbal, but uses basic sign languae to communicate. Her younger brother, Quinn, and mother, know he signs and understand her well. Sometimes her brother understands her a bit better than even her own mother! This is a testament to their strong sibling bond.

At age five, Brittany was diagnosed with Nager syndrome. During this time, Harlena, her mother, was divorced, struggling to stay employed, maintain sanity, and provide for Brittany and Quinn. Thankfully, this strong family lived in Philadelphia near Children’s Hospital of Philadelphia (CHOP) where Brittany was a patient. While at CHOP they were connected with the National Organization for Rare Diseases (NORD), Children’s Craniofacial Association (CCA), and the Foundation for Nager and Miller Syndromes (FNMS). CCA and FNMS provided Helena with answers to questions they had about Brittany’s syndrome. All of these organizations offered avenues for advocacy, networking, and a community of acceptance of new-found friends that would become family. 

In the end, with all that this family was given, their goal became clear: give back  to CCA by helping new families and individuals embrace the challenges they face, and learn how to live their best life!

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